Patients' Experiences of Being a Burden on Family in Terminal Illness


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Abstract

Studies of persons with chronic and life-threatening illness have revealed a fear of being a burden on family. The purpose of this case study was to explore that concern in-depth in three persons with different terminal illnesses. Participants were part of a larger study of end-of-life decision making and were selected for this study because their illnesses are characterized by a steady decline in health (amyotrophic lateral sclerosis), a rapid decline (stage IV lung cancer), or an uncertain trajectory of decline (advanced heart failure). Content analysis of their interviews resulted in four themes: managing the burden, spirituality, supportive relationships, and planning for the future. Themes contained specific categories of thoughts, feelings, and actions related to fear of being a burden. These themes should be explored in greater depth in future larger studies of persons with terminal illness.

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